CHICAGO — After being diagnosed with breast cancer, Hollye Jacobs felt like she lost her health, her breasts and her mind. But when she finished with radiation and started settling in at home, she was hit with another loss: She missed having treatment.
For many breast cancer patients, medical therapies — though grueling — can feel like a safety net. Once treatment ends and life is poised to return to "normal," survivors enter an often bewildering new phase of cancer care. Support dissipates, yet they still may face a host of physical and mental challenges, ranging from fear of recurrence to concerns about leaving their oncologist, questions about fertility, depression and sexual difficulties.
"It's easy to assume that as soon as treatment is done you'll bounce back," said Jacobs, 41, a Santa Barbara, Calif.-based nurse who chronicled her cancer journey on "The Silver Pen" blog. "But healing and recovery is a physical, mental and emotional process that takes an incredible amount of time. The more treatment, the more time it takes to heal."
The number of Americans living with cancer will increase by nearly a third to almost 18 million by 2022, according to a recent report by the American Cancer Society and the National Cancer Institute. Breast cancer survivors are the largest segment of that population, and they range from very young to elderly. Men make up less than 1 percent of all cases.
But even with that many survivors, there remains a lack of clear evidence showing the best way to care for them, and support varies widely, according to a 2005 report by the Institute of Medicine.
"How often do you follow them and what tests, images and screenings need to be done? There are very few guidelines for this," said Sheldon Greenfield, chairman of the institute's committee on cancer survivorship.
A critical first step after treatment ends is to craft a "survivorship care plan," said Linda Jacobs, the director of the Livestrong Survivorship Center of Excellence at the University of Pennsylvania's Abramson Cancer Center.
Ideally written by the oncologist, this plan should include the type of the breast cancer, which treatments were received (dates and dosages), as well as recommendations for screening and follow-up care to help with mental and physical side effects that may arise.
But not all institutions are equipped to offer the plans, and studies show that fewer than 20 percent of patients receive information on how to create one.
"It's very important," said Linda Jacobs. "Cancer is a trajectory. The end of treatment is not, ‘I'm finished and out.' It's the next part of care."
Several organizations, including Livestrong (livestrongcareplan.org) and Journey Forward (journeyforward.org), offer tools to help craft a plan.
Hollye Jacobs' plan involved a diverse group. In addition to working with doctors and nurses, she saw a nutritionist, an acupuncturist for pain, constipation and insomnia, and a yoga instructor. She also used guided meditation with a psychologist to help with debilitating side effects.
Still, it's not always obvious how to get the right kind of help. What follows is a look at some common concerns of survivors, as well as potential resources.
Karen Walson's greatest fear is that cancer will return in a different part of her body. It's a legitimate concern: Women diagnosed with breast cancer before age 40 have triple the risk of developing a second primary cancer, and a 4.5-fold increased risk of a subsequent breast cancer, according to the ACS.
"Once women survive one cancer, they need to keep monitoring for other cancers," said Ritu Salani, an assistant professor of gynecologic oncology at the Ohio State University College of Medicine.
Overweight and obese women face an increased risk of recurrence of the most common type of breast cancer (invasive ductal carcinoma), according to a new study published in the journal Cancer. Extra body fat causes hormonal changes and inflammation that may trigger a recurrence, the results suggested.
Regular physical exams and mammography are the cornerstones of breast cancer follow-up care, according to guidelines issued by the American Society of Clinical Oncology. Physical exams, which help doctors detect symptoms or signs of recurrence, should be performed every three to six months in the first three years following treatment and every six to 12 months in years four and five. At the five-year mark, annual exams are in order.
If a woman has one breast removed, the remaining breast is screened by mammogram (and sometimes MRI if a woman is high-risk), but there are no imaging tests recommended for women who've had a double mastectomy, said Dr. Patricia Ganz, UCLA professor and a director at the Jonsson Comprehensive Cancer Center.
Other tests, including bone scans, liver ultrasounds, CT scans and tumor markers, are not recommended for routine breast cancer follow-up in patients with no symptoms, the American Society of Clinical Oncology says.
A new blood test can detect cancer cells that have broken free from a tumor in the breast and help identify patients with a high risk of recurrence, researchers recently reported in The Lancet Oncology. But the test may lead to overtreatment, and the findings need to be confirmed by larger trials. The test is commercially available and has been approved by the Food and Drug Administration for use in metastatic breast cancer patients.
Other blood and urine tests shed light on what's going on inside the body, but with the exception of blood cancer, these tests generally can't confirm a recurrence.
The scope of physical complications after treatment is "shocking and upsetting" said Kathryn Schmitz, a cancer and exercise researcher at the University of Pennsylvania School of Medicine. Her research has shown more than 60 percent of breast cancer survivors report at least one treatment-related complication even six years after their diagnosis.
The problems — stemming from chemotherapy, surgery, radiation treatment and hormone therapy — rarely exist in isolation: For instance, many women with the painful limb-swelling condition lymphedema also struggle with fatigue and bone health challenges, according to Schmitz's study, published in April in the journal Cancer.
Care for these problems is fragmented, and some doctors believe certain problems can go untreated. Further, oncologists and surgeons are often poorly linked to physical therapists, who may be able to help with side effects, the Cancer study showed.
Side effects such as insomnia, fatigue and difficulties with memory and concentration can also wreak havoc in the workplace. Financial pressures often force women back to work before they're ready, and the Institute of Medicine found that survivors experience subtle employment discrimination.
"My professional life has been affected by chemo-brain, lymphedema, insomnia and premature aging such as bone and muscle loss, as well as attending several doctors' appointments for follow-up care," Nixon said.
Women face the potential of abrupt-onset menopause and its symptoms, including hot flashes and sleep issues. These symptoms may decrease over time. Treatment can also affect fertility and the menstrual cycle, and in general, survivors should wait until at least the two-year disease-free point before trying to get pregnant, Salani said, because the mother's survival rate is higher.
Schmitz strongly advocates exercise, which builds strength and stamina and helps with fatigue, insomnia and mental clarity. If you can't find a certified cancer exercise trainer, try looking for fitness trainers who are affiliated with your hospital, said Vik Khanna, a St. Louis-based exercise specialist and CET.
Mind-body therapies, including yoga and meditation, can help with both physical and emotional issues. Meditation, for example, has been shown to help with menopausal symptoms.
Psycho-oncologists can address the effects of chemo-brain and cognitive problems due to radiation and chemotherapy drugs.
For fertility or pregnancy issues, consult with an oncologist, gynecologist or fertility specialist. Fertilehope.org provides a list of fertility specialists and sperm banks, financial support and information on risks, and options.
Treatment drastically changes the body and a woman's relationship to it. Chemotherapy can age the body the equivalent of a decade over the course of just one year. In addition to the possible loss of one or both breasts, survivors also deal with weight gain, a common treatment side effect that may be exacerbated by a drop in physical activity, due to fatigue, nausea and pain. Treatment scars can be jarring reminders.
"I don't consider myself vain, but I didn't want to lose my breasts," said Jessica Cudlin, 25, of Dublin, Ohio, who had a lumpectomy in July to treat Stage 1 breast cancer. "Every time I see that healing scar it reminds me that life is too short and anything can be thrown at you."
For most women, sex drive declines when chemo begins — one study showed the frequency of intercourse dropped from once a week to one to two times per month. There is usually no return to pre-cancer levels, Salani said.
As a young survivor, Cudlin worries about dating. "I don't quite know the protocol in divulging this information — how soon do I share, how will he respond, will I have the urge to want to be close to someone again? It's something a 25-year-old woman shouldn't have to worry about."